I was recently honored when someone from MD Anderson asked me to contribute to their blog, Cancer Wise. My dad swears I should have seen this coming, but I often think that parents are supposed to tell their kids that they are good writers. I appreciated when he and my mom complimented me about what I had written, but I didn’t feel like I had done anything special.

That said, I think I’m a bit terrified to write for them. This is my space. I have a general idea who is reading and what they want to know. I write about what I experience, how I feel, and some general life things. I do my best to keep everyone as up-to-date as possible, all the while keeping a bit of privacy for me and my family. Cancer Wise is a whole new ball game.

I have no idea what to write. I feel a little like I’ve been thrown in the deep end. I know oh-so-little about sarcoma, what treatments I will be receiving, or anything else really. I was asked to write about how I was diagnosed and why I chose MD Anderson, so those can be done pretty easily. But what happens after that? I certainly don’t feel like an expert on anything.

So I ask: what would you want to know? If you were a recently diagnosed cancer patient or a caregiver for someone with cancer, what would you want to see on the cancer blog? If you, like me, had to travel almost 700 miles to receive treatment, what would you want to know about the hospital before arriving? Would it be interesting to you if I talked about the many ways people have blessed us throughout this journey? Would you care at all about my every day life or would you want me to focus on my cancer journey only? Please – any ideas would very helpful! Thank you!

I am so proud of you! I think ANYTHING you write about would be inspirational as well as helpful to other cancer patients. I think an article about the details of getting your hotel room, things that happened while you were there meeting the doctors, your feelings, etc. would be helpful. The ways people have blessed you would be inspirational, and your day to day life brings in the determination of why you are fighting this! I love you- and as an old song ( I think- maybe it’s an old sayng) just “keep on keeping on” with your blog!

I think if I were reading a blog post at Cancer Wise, I would want to read about your experience at MD Anderson. It is their blog spot and while I wouldn’t expect an all out advertisement/endorsement, I think I’d love to read what to expect, what to bring (including attitude) and what you think are the best and worst part of MD Anderston (distance, maybe?). I’d like to read your thoughts on how you are trying to hard to shield your child until he can understand. And when you think he might understand and you can discuss it with him.

As a separate thought, have you given any thought to writing letters to your child as you journey? I know he could read your blog posts, but that isn’t as personal as a letter in my opinion. I’ve often thought of writing letters to my child just in the course of our life together.

All of the comments are great. Think also, what would you want to know from someone who has been down this road. I think it is a great opportunity to share your faith and touch people around the world, not just our “community” of people who have been praying for you, and following you. By the way that community is way bigger than we ever imagined, with friends of friends, co-workers, whole churches, and communities passing on requests for prayer to others they know. You already know the fear at the discovery of tumors, the difficulties of surgery, the questions, the great people you’ve meet, things that comfort, the inspiring words from others (Aunt Jackie comes to mind) that was just the thing you needed to hear at the time. You’ve seen the miracle of a new diagnosis! You seen people step up to the plate, show great love for you, and do big things, like the 342 luminaries in your honor at Relay for Life. You’ve seen that this is a roller coaster, and that some days are bad, and some are the best. I think a newly diagnosed person would appreciate a “real” person’s perspective on these things. You write with honesty and great humor and I think this would inspire someone who is totally depressed about their situation to have some hope and see how obstacles are overcome. In other words, I think this is wide open to whatever you want it to be. You can always turn it down if they want it “scripted” in any way. I love you, sweetie, and I’m proud that they asked you!

Let’s see, I’d want to know the beginning stages. I think those people looking at the blog initially want to know where to start. So even answering the first two questions they asked and elaborating on those may be just enough. You could talk about some of what YOU did to get to where you are. Going to a local doctor first, asking questions, why you asked the questions you did, why you trusted your instinct (assuming you did just that), how you were initially diagnosed and then misdiagnosed. Was that because you asked questions or was it just by chance? Was going to MD Anderson the reason you found out you were misdiagnosed? I think those things are significant. Then, the dynamics of logistics – where you stayed, how you knew where to stay and to whom you talked.
Whatever you say will be great. BUT, although I cannot relate with what you’ve gone through, I can say that having a child who has a diagnosis I knew nothing about, I felt lost and helpless. Searching for blogs, support groups, and researching as much as I could was huge for me. At the time, I knew no one who was going through the same thing and had no idea where to start. Honestly it seems like this is the case with people who are diagnosed with something they know nothing about. Starting from ground zero, what would be important for those newbies?